Caring for a Person with Dementia at the End of Life: Part I

Editor's note:For this month's post from Geriatric Psychiatry, Dr. Kales is joined by Dr. Susan Maixner, a clinical assistant professor of psychiatry and director of the University of Michigan Geriatric Psychiatry Clinic. This is the first article in a two-part series discussing palliative care options for people with advanced dementia.

Unfortunately, having dementia does not protect a person against acquiring other illnesses. Not only must dementia caregivers manage changes in memory and behavior; they also are faced with decisions regarding treatment of their loved one's medical concerns such as heart conditions, breathing problems, digestive issues, diabetes, pain, infections, falls, broken bones, even cancer. These additional illnesses can be difficult to manage because the person with dementia has trouble understanding the illness and the treatments they are supposed to undergo.

As dementia progresses and co-occurring medical problems become more difficult to manage, tough questions can arise. When does the burden of aggressive treatment outweigh the comfort of the person with dementia? Are uncomfortable screening tests like colonoscopies or mammograms still necessary?

I'm Dr. Susan Maixner, a geriatric psychiatrist who has worked with many families caring for a person with dementia who has other medical illnesses. After struggling to find answers to these difficult questions, I sought out additional training in palliative medicine, to better guide my patients and families.

When weighing treatment options, the impact of dementia must be taken into account. A framework can help caregivers navigate these complicated health care decisions. I would suggest using the following steps to guide your decision making:

Know the goals

Ask questions

Educate yourself about options

Advocate for your family member

Know the goals of care

If you can, step back and think about the big picture.What has your family member expressed about their wishes for the future? Is it quality of life? What does quality of life mean? Is it freedom from pain or worry? Is it staying out of the hospital?

Once you've thought about this, you can use this knowledge as a guide you through the next steps.

Ask questions related to the goals of care

When a treatment, medication or test is proposed, engage in a discussion with your health care provider about the goals of care. Does this meet the goals? Will the test or treatment improve your family member's function or reduce pain? Here are some examples of the complex care considerations that dementia caregivers can face:

For screening tests like mammograms or a colonoscopy: Would the results change what we do? If cancer was found, would aggressive treatment be pursued? Is the test uncomfortable and difficult to tolerate?

For joint replacements or broken bones: Would surgery reduce pain? Will it improve the person's ability to get around? Will they require hospitalization and or rehabilitation?What is the risk of increased confusion after surgery? Considering the stage of dementia, could the loved one take part in necessary physical therapy?

Educate yourself about alternatives

Palliative medicine is the branch of medicine that focuses on comfort, quality of life, and maximizing function, rather than focusing exclusively on a cure. It is patient- and family-centered medicine that meets an individual and family's goals. It addresses relief from all kinds suffering—the physical, mental, social and spiritual aspects of an illness. A palliative approach is appropriate any time a person is dealing with a serious illness that is expected to worsen, and they have troubling symptoms that need relief and cause them and their family distress.

Palliative medicine should not be equated with "giving up." It treats symptoms, while minimizing painful tests, procedures and disruptive hospital stays. Palliative medicine coordinates with the rest of your health care team, it does not replace it. Palliative approaches can occur along with curative approaches. Palliative medicine supports the family and caregivers—realizing that serious illnesses impact the entire family.

Palliative medicine is one approach that is available to persons with dementia and their families.The benefits of the palliative approach are using the goals of care as a roadmap, while treating distressing symptoms and caring for the family.

My next post will address end of life discussions, hospice (a subset of palliative medicine when life-expectancy is less than six months), and care choices involving infections, feeding tubes, and intravenous fluids.

Dr. Helen Kales

Helen Kales, M.D., is professor of psychiatry and Director of the Section of Geriatric Psychiatry at the University of Michigan. She is the Director of the Program for Positive Aging (PPA), which focuses on emotional wellness, aging well and improving life for those with later-life depression or dementia and their caregivers.

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Thank you for this excellent, informative article on palliative care. I am a hospice chaplain and address these issues each day with my patients and their families. I especially look forward to your next article regarding hospice.

One of the most difficult issues that we face is that of families who insist on force-feeding their loved ones, believing this to be in their best interest. I look forward to reading your counsel.

Mother in law was recently in hospital after syncope. She is 95 and has severe aortic stenosis and staged by neuro/psych eval as severe Alzheimer's. A palliative care nurse was excellent and supportive in guiding us to begin hospice. She stabilized and was taken off after only a month. It seems these days there is a trend more geared for comfort measures. Her quality of life has diminshed, and she would be appalled to know some of the things she now does in public. She was a teacher and head of department. There are many students of hers still in her area. Her "image" of things being perfect was foremost important to her. My MIL's advanced medical directive states if incompetent, she does not want antibiotics. Her hygiene problem causes UTI's. It is a very hard decision to make. There are not easy anwsers.

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